Project: My Health My Life, a symptom tracker and appointment planner for young people with IBD
A series of insight workshops with 12-18 year-olds aimed to uncover the problems and pain-points experienced by young people with IBD.
Using facilitation techniques that allowed young people to set the agenda, it quickly became apparent that participants felt excluded from decisions about their care. They reported ‘switching off’ in appointments because they felt their views wouldn’t be considered or because they were overwhelmed by their condition.
‘Sometimes I’m just too tired or embarrassed to want to go through it all.’
Young people did express a strong desire to be more involved and started to explore solutions to support them to talk about the things that mattered to them in appointments, including decisions about treatment.
‘If it was written down they’d have to take me seriously.’
These key insights galvanised young people to co-create a health tracker covering pain, fatigue, medication side effects, toilet tally, appetite, and mood and feelings. These were issues identified by young people as most important to them.
The tracker also allows them to record medication taken and days when they have been absent from school, college or work because of IBD.
A quarterly appointment planner empowers young people to get the most from their 15-30 minutes with their HCPs. They review their symptom diary and highlight critical concerns about their health to set the agenda before their appointment.
The planner was user tested with young people and the layout and content revised in response to feedback.
Healthcare professionals were also consulted on the format to ensure it would be a useful tool in consultations and help equip young people with the skills they need to participate in their care when they transition to adult services.
"I absolutely love the Symptom tracker book. This is such a great idea and so clear and easy to follow. This will not only help patients track their progress but will be so helpful in clinic."
IBD nurse specialist
"The tracker looks really good! It’s clear and simple. My only thought was it might be useful to record if the Dr wanted any investigations doing, like bloods or scopes. I know I have been told in appointments than I need scopes doing, but have sort of blocked it out and then been surprised when the letter comes to tell me about it!"
Feedback from a young person with IBD actioned in the final project